The Value of My Son's Organ Donations for Medical Research

I love the month of April. The earth comes alive again after a long and dreary winter. April brings with it a sense of hope. It’s no wonder April is National Donate Life Month.

Each year, I join millions of others in celebrating and raising awareness about organ, eye and tissue donation. Like many, I started celebrating National Donate Life Month after my life was directly touched by donation — but not in the typical way. Many people spend the month sharing stories of how their loved one gave the gift of life through a donation for transplant, or how they themselves (or a loved one) received a life-changing transplant. My story fits into neither category.

In September 2012, my son passed away 80 minutes after being born. His life was brief, but he was loved for every second of that life. Once my son passed, we allowed him to became a donor — a donor for medical research. Weighing only 4 pounds, 9 ounces, he was too small to qualify for any types of donation for transplant.

When we learned he wouldn’t qualify for a transplant donation, we were sad because we would have loved for our son to directly save another person’s life through a transplant. But this news didn’t stop us from wanting his life to still make a lasting impact through the gift of donation.

When we were presented with the option of donating to medical research, we were thrilled. We were even more thrilled to learn our son would be able to give his liver, his pancreas and later his whole body to different research recipients.

Over the years as I’ve shared my son’s story, I have found many people don’t understand the importance of our son’s gifts or the impact a donation to medical research can make. Somehow, people seem to view his gifts as “less valuable” because they weren’t used for a transplant. Some have even struggled to view him as a true donor. Please realize, as I stated before, we would have loved for him to be a traditional donor — with organs and tissue going for transplant — but that isn’t how his story turned out.

What I can tell you, however, is this: My son’s gifts were valuable, extremely valuable. His gifts were utilized by his recipients (the researchers) to further investigate type 1 diabetes, liver disease and pediatric intraosseous vascular access. They also provided training for emergency medical providers and first responders. His gifts even helped get a new procedure passed through the FDA — a procedure that has already saved lives.

Yes, his gifts were valuable.

My son’s donation also became a catalyst in allowing a new neonatal organ and tissue donation program to form through an organization called the International Institute for the Advancement of Medicine (IIAM). IIAM specifically places organs and tissue with researchers when donation for a transplant isn’t an option. Prior to my son, IIAM hadn’t worked with neonatal donors. Since helping to find placements for his gifts, they have to date gone on to help the families of 56 other babies who have passed right after birth to have an opportunity to donate to research recipients. From those 56 donors, IIAM has been able to place 178 organs/tissue, all for medical research. Most of these neonatal donors were like my son, too small to donate to transplant. The option of donating to medical research allowed them to still give the gift of life.

Stop for a moment. Think about the amazing discoveries that are being made through those 178 gifts and the number of lives that can be saved and improved because of the generosity of those 56 donor families. It’s truly incredible.

Our story of donation may not be the traditional story. My son may not have given like others were able to give, but his gifts still had value — great value. I’m a very proud donor momma and always will be.

This April, I boldly celebrate National Donate Life Month and my son’s gifts to medical research.

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Bethany is the mommy to three amazing children – one who is in heaven, the other two here on Earth. Since losing her son in 2012, Bethany and her husband, Eric, founded a 501(c)3 non-profit organization called Purposeful Gift to educate the public about neonatal organ, eye, tissue, and whole body donation; she has become a national speaker on the topic. Prior to forming Purposeful Gift, Bethany was a special education teacher and taught students who had severe/profound multiple disabilities, many who were medically fragile. Bethany now enjoys being a wife, mother, and serving her community.